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Tuesday, September 29, 2009

I have several ideas for blog entries, but physical limitations have intervened. Get this...in an effort to stave off having to take more pain killers for the bone pain last night, I took a LONG hot bath. In an effort to feel domestic and helpful around the house (and have a clean, dry towel after my bath), I took all the clean towels into the bathroom and threw them (unfolded) into the basket in the bathroom closet. After my bath, in an effort to find some centeredness, I decided to fold the towels, because I love how tidy and organized folded towels are.

Got all that?

In folding the towels and tossing them folded, after my long hot bath, into the towel basket in the closet, I somehow snagged the nail on my left ring finger, and ripped it off way down into the nailbed. And it bled, and bled, and bled and bled....and now I have this huge bandaide on it and keep hitting more than one key with that finger, plus it is quite painful.

On top of that, each round of chemo has increased the neuropathy in my fingers and feet. It waxes and wanes...worse about now, better just before starting another round, but regardless, there's still numbness in my figures, causing for clumsy typing. So, uber-owie in one finger and lessened feeling in 9 fingers....

Anyway, so this didn't end up being quick....

But there is ultimate good news....the biopsy on my right breast came back negative for cancer. I have fibrocystic breast condition, which over 60% of all women have. It's nothing as long as it doesn't bother me. Some types of PCBC indicate an increased risk of breast cancer, but not the kind I have.

So, nothing really MUST be done with my right breast.

That opens up other options for later on.

And I'll know more about those options after we meet with the plastic surgeon on Friday.

And now, the finger I can feel says I must stop typing. More on these topics later.

Wednesday, September 23, 2009

Had chemo today and had my last yoga class for this session. One was more enjoyable than the other...wanna guess?

The chemo infusion isn't bad. It's boring. It makes for a long day. I first have an appointment with the onco. I heart Dr. Mohamad. She rocks. I'm not so keen on her intern. I heart the intern's student doctor, Katie. Katie will make a great doctor. She remembered me, my case, my meds, my occupation, my family. The intern? Not so much. I got to her office at 9:30 and walked out of chemo at 4:15.

So, here's a lesson childbirth taught me: don't get excited about progress until someone tells you the progress you have made. Don't just imagine how far you are. I seem to make a lot of comparisons here to cancer and pregnancy/childbirth. There ARE a lot of similarities.

When I was in labor with each child (I have never claimed to learn things quickly), I'd be jumping all over my midwives to check my progress (regardless of what was in my birth plan), certain that I was "almost there." And each and every time (well, except for Aidan, where I was never checked until I was pushing...so maybe I just forgot that when it came to Tynan), the news wasn't good. I'd be thinking....gotta be close to 7 and hear "You are at 3" and I'd immediately feel my heart sink and get discouraged. To be honest, I never let that interfere for long, but I also hate that heart sinking feeling.

I've decided to avoid that as much as possible with this whole cancer thing. I have at least learned that I'm not in control (as much as I hate accepting that, but were I in control, I'd not be in this space on life's spiral). Therefore, I'm not at all palpating the tumors. I so do not want to think, "Awesome! Smaller" only to hear differently from the doctor. This has resulted in my going in cold to see Dr. Mohamad the last two visits (before chemo two and today, before chemo three).

Today she walked in and asked if I had good news for her...was it smaller. I told her I wanted to believe so, but she was the expert. She palpated, and palpated, and palpated and announced that she could feel nothing. Now, this woman has felt up a lot of boobies, so if she can't feel either tumor, then they are too small to be felt.

Even she seemed surprised that they had shrunk so much, so fast. She even said, "I was thinking that you'd only had two treatments. Did I lose one or two?" Nope. It's working and working fast.

I understand that it is mostly the medicine. Breast cancer has a lot of research behind it and mine is "garden variety." It's not a tricky treatment. Long. Still have months to go...several surgeries and 8 weeks of radiation...but it's pretty basic stuff.

Yet, I've also been working hard. I'm a natural night owl. But for two months now, I've been going to be most nights by 11:00 or earlier. I'd go even earlier, but if I'm to sleep more than a couple of hours, I need to take my pills no earlier than 10:00. Otherwise, I wake up at 4:00 and can't go back to sleep. Or I hear Louis when he gets up at 4:30 or 5:00 (or 2:00 on Thursdays) and can't go back to sleep. No pills before 10:00. Learned that lesson. It's hard for me to give up my late nights. It's taking me weeks to finish books, for instance. No more late night chats with West Coast friends and other night owls. No more late night weekend nights. Didn't close down the Swamp Fest this year.

Doing Focused Visualization has also been a hurdle. I've got a very typical ADHD neurology. My brain skips around (as anyone who has had conversation with me should have realized by now). It's hard for me to not be making my grocery list, talking to myself, creating stories, fretting about the kids, planning lessons ( I seem to be able to visualize my classes fairly well, sadly). For the last six weeks, I've been trying to spend 30 minutes a day, in fits and starts, visualizing pacman eating my cancer. It shouldn't make me grit my teeth, but it does. It's reallly hard for me.

I just finished six weeks of yoga classes. That was a huge stretch for me (who knows what to do with that pun). Going into something physical, doing something I'm not good at, something that reminds me constantly of how old I am and how much I'm not that young person I used to be, not that person in my head. Even worse is hearing stuff like "Root down, open your hips, flower your buttocks, shoulder blades on back..." and thinking "What the fuck? Root what where? What the does a flowered buttock look like? Good thing I'm in the back..." I still don't understand half of what I"m asked to do. I fake it; I also love it. My teacher is awesome and definitely worth the drive to Monclova. Thank you, Amy for the suggestion and encouragement.

I'd like to say I haven't changed my diet significantly, but in actuality I have. I'm doing what I know I should do, and doing it much more diligently. I've nearly totally cut out all refined sugar and flour and other carbs. I'm doing (and it really does feel like taking medication or something) 10 servings or more of veggies and fruits a day, on the "good weeks." No one needs to know what I eat in the 5 days after chemo. If it sounds good, it goes in. So far that technique (and a lot of zofran) has kept nausea at bay for the most part. Having lost half my taste buds has also helped in a way...for the first time in my life, when I'm full, I can easily stop eating because I reallly don't taste much of the food any more. I even threw half an apple away today, and ate only one bite of the cookies that were dropped off today.

Some of the hardest work I've had to do is accepting help from others. I have the best, most caring group of friends in BG. And another group of awesome friends on line. In fact, I've been friends with some of the online people longer than many of my real life friends. Some of us met up online in 1995, when Aidan, now a freshman in high school, was a nonstop nursing babe in arms. My real life friends have formed this wonderful "meals on wheels" posse. I haven't had to do much thinking about what to feed the family for weeks. I normally love cooking for my family, especially at this time of the year. However, I never really realized how much time and energy doing so requires. The mental energy alone...reading ads, making menus, preparing lists, remembering to actually cook, juggling meal times and soccer practices and games and travel and teaching and and and and...the meals we've been getting have been 100% awesome and more helpful at keeping this family going than I can even verbalize. Having that extra time and energy means we can actually spend time as a family. Having that extra time and energy means I can do my exercise or visualization. Having meals provided for us means that I can focus on me. And it's been a long time since I've been able to say, "I'm going to go sit out in the yard and feel the sun" just because I want to do that.

But at the same time, accepting help like this, for so long, from so many people has been really hard. I don't know why, really. I've done the same for others. In the midst of this, I took a meal to another family that is dealing with a cancer recurrence, another family with a mom with cancer and a teenage son. It just seems unfair...they've already gone through this. So I dropped off one of the freezer meals we have in our freezer. I've taken many meals to families with new babies over the years. Sometimes just Subway or ordered in pizza, but meals nonetheless. I've taken care of other people's kids when they were sick, helped clean their houses, done their laundry. Yet, it's still very hard for me to realize that I need this help I'm getting and it can reduce me to tears to think about how much harder life would be if it weren't happening. We'd be up the proverbial creek, especially given my husband's crappy, stressful and exhausting current job situation, not to mention his 24/7 pain from the torn ligament in his ankle. Graciously accepting help has been hard. But I"m getting better at it.

The help with house cleaning has been another hurdle for me. To have people come into my house and see the clutter and mess we live in...ugh. Actually, we've been doing much better since we got rid of so many possessions over the past two years. Right now, it's just boy/man space that is the clutter/disaster of our past. Having older kids makes a difference, but my kids seem incapable of not making messes just by breathing. Heck, all five of us have that issue. Have you seen my office? Yet, because our house is cleaner than it has ever been, it also seems indulgent to have the "Cleaning for a Cure" posse coming in the day after chemo, and to know they were willing to do it more frequently seems really indulgent. However, last time, walking into a sparkling house after work that day was AWESOME! Oh my gosh.

Finally, but not the last (it's just time to stop writing...Nathan has informed me my blog entries are so long he can't read them...I just think that he's jealous) is that I've been getting up and exercising in the mornings. Along with being a night owl, I'm also not a morning person. Mornings suck. They are painful. Rise and shine should not take place prior to 9:00 a.m. "Business Hours" should start at 10:00 a.m. Classes should not meet prior to that time, either. But instead I'm out there walking by 6:30 every morning lately (or I was until the stupid blisters today). And then I do it again later in the day. I hate exercise for the hate of exercise. Never have liked it much. I don't mind climbing a mountain. I hate walking in circles. But I'm doing it. Supposedly it gives me more energy. There are studies that show that exercise reduces cancer recurrence, and I want to do whatever I can to make my body the most inhospitable place for cancer ever. Plus, I also hate this feeling of being a patient. It's horrible. When the cancer thing is finished, I don't want to segue into being a heart patient or something. Plus, I can control exercise. It's one thing I can control. But ARGH, I don't like it.

Silver lining to all of this? There are approximately five days out of each three week cycle that I feel "normal" or truly good. And I think this past cycle, I felt better than I did before starting all this crap.

Ultimately, while the chemo is doing the vast majority of the work, I'm working hard, hard, hard to help it. And to be honest, it will make my life better in the long run (pun intended). At the same time, this is waaaaay more exhausting and time consuming than I might ever have imagined. I saw a shirt that says "If I'd known how time consuming cancer is, I wouldn't have gotten it." Ain't that the truth. It's all consuming.

Monday, September 14, 2009

You'd think I'd have learned this in all my years: any semblance of control I think I have is merely illusion.

Furthermore, paitence is not a virtue. It's not worth the effort to be impatient.

I met with the surgeon today. She's awesome. She comes highly recommended. She's awesome. Did I say that? She is incredibly personable. However, before I talked with her, I had to fill out reams of paperwork, most of which is a repeat of paperwork and history I've filled out already for the oncologist, who had given them my file, so all that information was already there. This is where the patience part come into play. Then the surgeon's intern came in and asked me every single question on all the paperwork I'd already filled out. Breathe in. Breathe out.

I know they are busy doctors. I appreciate that. But this is the second time in recent weeks I've done the exact same thing with an internist, neither of whom have very good patient rapport. Both doctors are incredibly personable. I wonder if working with such unpersonable interns bothers either doctor?

So, enough with reliving my impatience.

The surgeon had some definitive answers for me. Yes, I will have surgery. My left breast will go. I will then receive radiation therapy. The surgery, at least, will probably happen in December. Maybe the radiation can be finished by the end of December, which for insurance reasons would be ideal.

However, the MRI and mammogram show some calcifications in my right breast, which may or may not be more cancer. Lots of women have calcifications in their breasts. They are common as we age. Most are nothing. However, once you have been diagnosed with cancer, nothing is ever looked at as "nothing" ever again. This breast has been poked, prodded, and felt up by many, many people in the last eight weeks, and no one feels anything in it. But that means nothing, and as I said, nothing will never again mean nothing. Therefore, next week, before I go back to get my Neulasta shot on Thursday (after chemo on Wednesday), I'll have a biopsy on my right breast, the outcome of which will determine what will happen to it. It's pretty clear that it will also be removed, but how and when has yet to be determined.

What all this leads up to, then, is what to do about reconstruction. More decisions of the type I hate...the ones where I never am sure I'm making the right one.

Part of those decisions has to do with receiving radiation. Part is determined by how much reconstruction has to be done, and, believe it or not, if I am fat enough. Ideally, I think I'd prefer to have my own tissue used for the reconstruction as opposed to implants. Yet, do I want to have the reconstruction done with my own tissue and than radiate it?

Do I have enough tissue to do both sides at once? I'm thinking I have to have at least a decent size breast in each inner thigh, not to mention my stomach and hips and back fat...I could probably enhance all workers at the average Gentlemen's Club.

If the right side doesn't have to be done immediately, would I want to do the left, then do the right later? Would I be brave enough to go through it all again?

Or, have spacers put in and later have implants. That doesn't really appeal to me because implants have to be replaced over time. Also, radiation can ruin spacers, I guess. Another option is to have the spacers put in and not..erm..pumped up, get the radiation, and if the spacers survive (I really understand none of this), have them pumped up later to the size I want (how neat is that?...choose your own size).

Then there is the option of having nothing done for the time being. Do radiation, and then have reconstruction done at a later time. That's not a bad option, but it does mean more surgeries. I don't like surgery. I know myself well enough to know I'd probably not wear a prosthetic. I understand they are heavy, hot, and inconvenient. Hot flashes are bad enough without a pound or so of rubber on my chest and a special bra. Would I be comfortable going without breasts, though? Being bald is one thing. I go out everywhere but teaching usually without covering my head. But without boobs?

Of course, nothing can be decided until the results of the biopsy are in, I meet with the plastic surgeon, and then I meet with the breast surgeon again.

Meanwhile, I just have to surrender all of this to the universe and let it all go. I have absolutely no control. As we all know, I hate not having control. Hate. It.

Meanwhile, I grade essays and get ready for the next round of chemo next week, both of which get really old really fast. I amuse myself by accumulating new headwear and planning tattoos.

Sunday, September 6, 2009

We all belong to many "clubs," those groups of people with whom we share similar interests. At the most basic level, although our experiences are all different, all of us are sons or daughters and belong to that particular club. At some point in their lives, women can, usually, carry on general interest conversations about topics common to our lives, even if they aren't topics we'd normally or naturally gravitate to, but we are capable, most of us, of superficial "club talk." Men have similar topics. Sure, not everyone belongs or is comfortable in these clubs, but most of us can hang out in the clubhouse, at least for brief periods.

There's the "work" clubs. Teachers, regardless of what and whom we teach, belong to a club. Parents belong to a club. Wives. Husbands. Mothers. Fathers.

But then there are the super-exclusive, private clubs. These are the clubs most people don't apply forand frequently aren't happy to find themselves members of.

I first realized how exclusive some of these clubs are when I joined the "Stillborn Baby" club back in '91. First, I'd never realized how many people had lost babies until that time, when it seemed that they were crawling out of the woodwork. Just about everyone I met told me about their loss or how someone they were close to had lost a baby. Furthermore, up until that point, I'd never realized how deeply significant such losses are. And to this day, I feel horribly for how I'd minimized such losses.

Then I got to join the "Second Stillborn Baby" executive committee of that club. Really, just being a regular member was good enough for me. Seriously. I still don't really appreciate that little invitation, and I don't know why fate accepted it for me. Yet, that was a long time ago, and I'm cool with being a member of this club now. In fact, at this point, I am rarely even aware of my membership. I notice on the birthdays (and since one of my living children shares a birthday with one of the dead and another of my living has a birthday 3 days after his dead sibling, it's not like those days got totally unnoticed), but it's all just part of life now. I guess it's sort of like being from Ohio...it's just something that is in my life. I might not have chosen it, but I'm not going to let it make my life miserable or waste time wishing it weren't at this point.

Obviously, the most recent club I've become a member of is "Club Cancer." It's a HUGE club, as we all know. Cancer is something that touches all of us. I would hazard that not a single one of you has not been touched in one way or another. Within the club, there are many special interest groups. You name it, there's a cancer for it. And a ribbon for it. (really? homeopathy awareness? seems a little unnecessary).

Obviously, some cancers are more common than others. For instance, .12/1 million people a year are diagnosed with cancer of the appendix. That's slightly more than 1/10 of a person per million people...so a whole person for every 10 million people. That's the equivalent of one person in all of Belgium. When it's you, the incidence is 100% and all consuming, but clearly appendix cancer is not something most of us should lose sleep over.

On the other hand, most of us probably have a skin cancer somewhere on our bodies. Non-melanoma skin cancer is the most commonly diagnosed cancer in both men and women. In women, the second most common type of cancer is breast cancer. In fact, in the US, 1 in 8 women will be diagnosed with breast cancer.

One, two, three, four, five, six, seven...shit.

As best I can tell (without actually doing math or reading something complex--so, kids, should you stumble across this blog, don't cite this as a reliable source), about 1 million cases of breast cancer go undiagnosed. Let's just say, most of us worry more about our kids being abducted (when in reality, there are very few non-family abductions...in 1999 about 58,000 , only 115 of which were stereotyical kidnappings in the United States).

Anyway, being a member of the "My Child Was Kidnapped" club would be very exclusive indeed.

However, being a member of the "My Boobs Have Betrayed Me" club isn't quite so exclusive, and, sadly, the club is growing daily, hourly. All of those of us with children are much more likely to be diagnosed with breast cancer than to have our children abducted. In fact, I'd say we really don't need to worry about our kids being kidnapped. Let the kid go to the park, ride her bike around the block, play outside after dark...but do your monthly self breast exam and get your annual mammogram, OK?

Last night, I attended a local social gathering of about 200 people. I know many have been touched by cancer because many have told me. At least three people told me about their experiences with breast cancer. One woman told me about her breast cancer experience and about her miscarriage.

Heck, by the time I got there, I'd just missed my breast cancer/chemo "mentor", who had gone home with her daughter before I got there. How much does that suck? There are so many of us that we can help each other? Yep, that's a good thing, but sheesh...We say things like, "My friend who is 8 months out..." without batting an eye. We share hats. Sure, it's better to not feel like you are alone. But really?

Let me tell you, this is NOT a club you want to belong to. It's a big one. It's a growing one. Breast Cancer is the Glam Can of the new millenium. If I have to have cancer, this is the one to have right now. Lots of research, lots of support, every day more and more women survive. I've told people I don't want to hear about anyone who has died from breast cancer (or any cancer, really), but most people are only aware, in recent years, of survivors. And that's a Good Thing (tm).

If the club has to be big, let's keep it big and living. But ideally, let's make it a tiny club. Let's make it equivalent to the Appendix Cancer Club. In fact, let's just make any Cancer Club a thing of the past, like White's Only Social Clubs...sure there are a few around, but most of us don't take them for granted nor do we approve.

Wednesday, September 2, 2009

Right now, I'm finishing up the last of this week's infusion...been here since 11:00 and it's now 3:32. About half an hour to go.

So far, it's been an uneventful trip. That's the way we like it.

Met with the oncologist this morning. I so like her.

In sum, the swollen lymph node in my arm pit, which was about 5 cm three weeks ago, is no not palpable, it has shrunk so much. The two tumors in my breast have both shrunk significantly, and there is less swelling in the breast.

That's all excellent news.

Doctor is happy I'm doing visualization and yoga. She thinks meditation would be good.

She reviewed all the rest of my test results, and I found out that the CT scan was clear, so it appears that this is all fairly localized. Good.

MUGA, which is a test of heart function, was good.

We also began discussing what to do after chemo--still a ways off. But we are discussing a double mastectomy. I have no family history and the types of tumors I have are caused by genetic mutation, and that gene will still be throwing off mutations when this is done. So, it makes sense to take them away.

That's not going to be fun, but I'll get new boobs that aren't pointing to the ground out of the deal. I'm done with these. They've served me well.

Probably have ovaries removed as well...I'm going to lobby for all those bits and pieces taken away...it's not like I'm using my uterus...

So, that's that. I'm pleased that the chemo is working. If I have to do this, it's nice that there is something concrete and immediate to reward me.

And I'm very grateful for all the support and loving kindness that I've been getting. I have an awesome group of friends and family. So many people are not as fortunate at all.

Tuesday, September 1, 2009

In the days leading up to the start of the school year, I debated what to tell my students about my cancer. I'm normally pretty open with my students, and I frequently ask for their input on issues with my boys. They've given great recommendations on gifts, made good suggestions about parenting issues, been really frank about what their parents did well and where their parents could have done better. I always start off the winter semester by asking students for recommendations on movies I should watch during bad weather, and I'm nearly always pleasantly surprised by their enjoyable suggestions. The closer my own children get to the ages of my students, the more I feel compassion toward students and the more tolerant I am of their foibles. In general, although on some days it may not sound like it, my students are nearly always great kids, and it's too bad that I allow a few bad apples to ruin it for me some (many?) days.

Initially, I'd planned on starting to wear my wig even before my hair fell out so that they just knew me with Casey. But I just couldn't bring myself to do it. I may NEVER wear that wig. It's icky. Yet, I'm very conscious of not freaking out these brand-new-first-time-away-from-home-cul-de-sac kids. Then I thought maybe I'd just wear a scarf from the beginning. But I was having so much fun with my short hair that seemed to not be fair. After all, by the time school started, my hair would be on borrowed time. Taking 5 hours a day out of enjoying my hair just wasn't right.

Every semester, I tell my students that since we are going to be spending 75 or more hours together over the semester and because of the type of assignments, discussions, and activities we do, I am going to get to know most of them quite well. It's only fair that they also get to know me, so on the first or second day, I let them ask me any questions they want...nothing is out of bounds, although I do reserve the right to refuse to answer (something I've only had to do once or twice in 21 years). They ask me about my likes, dislikes, family, experiences, etc. I'm pretty blunt and straight forward with them. I like to say that there is a wall separating me from the class, but it is a low wall, and I'm sitting on it most days. When the semester ends, I'm more than happy to invite them over the wall, into my yard.

Therefore, I decided just to be straight with them. On the first day, after discussing Achievement Requirements, I just straight out said that we had one more order of business, that I'd be out of class every third Wednesday and they'd either have a sub or have an alternate, but equivalent to class, assignment on those days. I have cancer, and on those days, I'd be getting chemo. I also said that my hair was on borrowed time, but that I had a wig, although I wasn't sure I'd wear it. I'd probably use scarves or hats. I then asked them for two favors: (1) to be mindful of their health and their germs; to try to wash their hands shortly before coming to class; to not come if they were violently coughing or sneezing; to be mindful of flu symptoms and to stay away from me; and if they didn't feel up to par, to sit as far from me as possible and to let me know so I can take precautions; and (2) to please, if they have had experiences with cancer themselves or with family and friends, only tell me positive stories if they felt the need to talk to me, which I am not opposed to.

Interestingly, each class reacted differently. My 8:00 am class was silent. It's still the middle of the night after all. They still haven't said anything. One student in the 9:30 class, when I said, "I'm looking at this as a year of suck, but it's just a year and I'm going to have as much fun with it as I can" replied, "No shit. So what are you going to do for fun?" And I told them about the plans for henna tatts, collecting hats and scarves, looking for the humor, watching Golden Girls and other crap TV, justifying buying an itouch...

My third class was all "ooh, um, mmmm hummmm" and dropped it, except to ask questions about cancelled classes, and would I cancel classes if I were sick after chemo? But today, after I reviewed with them how to complete their On-line, out of class assignment for tomorrow, I could tell something was going on in one area of the room, lots of shifty eyes, muttered comments. Finally, one student said, "Ok, I'll ask...So, does chemo hurt?" And then someone else said, "Yeh, so what's it like?" that opened the door to discuss my experiences so far, and another student, whose grandmother has had breast cancer, and whose mom and aunt are currently in treatment, talked about their experiences. They asked whether I had shaved my head, did I do that tattoo thing...so I showed them my henna and they were all over it. That was nice.

Which brings me back to day 2 with my 9:30 class...a unique group because all but 5 are male, and there are lots of strong, leader personalities in that class. After I asked if they had any questions about the requirements or anything else, one asked, "So, what kind of cancer do you have?" followed by, "What stage?" "What's your cocktail?" "How are your kids taking it?" So, we had a talk about my psychological approach...not discussing stage or odds since that can just be discouraging to my personality type. Today, when I dismissed them, several of them wished me well tomorrow. That was thoughtful.

Overall, I'm glad I sat on the wall about all this. And, when I think back on previous years, it is the unusual semester when I don't discover that I have students who are living less than optimal lives. Over the last two years, I had a student whose mother had Alzheimers and he was worried she's forget him while he was away at college. Another was grieving his father's death. Another's mother had two heart attacks. Three students had lupus. One student had brain damage. I mean, it's not all about me.